Working mother of a disabled child – a lifestyle choice? – #100days100stories

The Extra Costs Commission has been investigating the extra costs of disability and as they publish their interim report we want to share Hannah Postgates’s story which we first shared with you in September 2014.

For some parents and carers of disabled children, returning to work is a necessity. Hannah is a writer, speaker, campaigner and mother of two;  one with autism and complex learning disabilities. Here she talks about attitudes towards working mums as part of our 100 stories in 100 days campaign.

The emotions of returning to work for any mother are tough, but putting that aside just for a moment, for many disabled families, returning to work is a necessity, economically. In fact it is even more vital as the financial burden is so much greater; bringing up a child with a disability is forcing families to go without essentials and get into debt.

• 52 per cent of families with a disabled child are at risk of poverty.
• It costs three times more to raise a disabled child.
• One in seven families with a disabled child are going without food.
• Almost a quarter of families are going without heating.
• 41 per cent have fallen behind with bills, council tax, rent or mortgage.

(Contact a Family Counting the Costs 2012)

So where does this attitude, pervasive in so many circles, that working as the mother of a disabled child is somehow an indulgence, an advantage, a lifestyle choice, come from?

Well, from Local Authority (LA) staff for a start. From people on the frontline, working closely with families, all over the country; in Cambridge, London, Cornwall mothers are reporting attitudes like:

“Today, I was told by our LA that working, ‘is a lifestyle choice’ and I ‘choose to make my life difficult’.”

“My LA asked me, ‘Can’t you give up work because we can’t find your son a school?’”

“According to my LA apparently working is ‘my choice’ and I could ‘make my life easier by not working’.”

“I was told that returning to work was a lifestyle choice.”

“When I asked for respite, I have twice been told work is ‘respite’ and I choose to do it.”

How dare they? How dare they make sweeping assumptions about why we work? What makes work NOT a necessity? The main barrier to work for most mothers of children with disabilities is affordable appropriate, quality childcare. The battle for childcare is mammoth, exhausting, and perpetual.

Combining work and home is wrought with guilt, anxiety, shame for mothers like me – we want to work for our families and ourselves but are we letting our children down, perhaps we are being spoilt if we think we can have a job and be mother to a child with a disability? But yet why should we be left behind the equality movement? Setting up my own business has empowered me to say, “I do have a right to work!”

Work is a necessity for many of us, not only financially, but also emotionally, mentally and for the benefit of society. Yes, for society!
Society needs to wake up – without work, many families like ours are at risk of loosing their homes, suffering mental illness, family breakdown. What are the costs of that to society? Housing, sickness benefits, children’s services and more.

Instead, if we are able to work we contribute in financial ways; in tax to the Country’s coffers, but also as valuable, trained, qualified, experienced, skilled workers in many areas of industry, business, teaching, medicine and more.

We are a growing group of mothers and we are no longer staying invisible – share your story below or  tweet us.

You can read more about the lives of disabled people and their families in our  100 stories in 100 days campaign. You  can also chat to Hannah on Scope’s online community about any of the issues raised here.